Psychological Adjustment in Children and Families Living with HIV

Michelle J. New, PHD, Sonia S. Lee, PHD, and Brenda M. Elliott, PHD
Children’s National Medical Center

Objective To assess psychological adjustment in children living with human

immunodeficiency virus (HIV) and their primary caregivers. Methods The study protocol
included use of standardized questionnaires to assess emotional and behavioral health of 57
children and 54 caregivers (Phase 1). Positive screening led to standardized interviews to assess
current psychiatric diagnoses (Phase 2). Results Of the 16 children who entered Phase 2, 6
(38%) met the criteria for a psychiatric diagnosis. Of the 15 adults who met the screening
criteria, 13 completed a computerized psychiatric interview and all 13 (100%) met the criteria

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for a psychiatric diagnosis. Conclusions While important mental health needs were
identified in families with HIV, the majority of families did not exhibit mental health disorders.
These results might reflect the substantial psychosocial resilience of these families. Further
study is needed to determine to what extent the mental health needs of children and their
caregivers are being met. In addition, identification of protective factors in resilience and coping
in families living with a chronic illness is warranted.

Key words children and families; HIV; psychological adjustment.

Significant advances in the treatment of human immun-
odeficiency virus (HIV) have led to dramatic improve-
ments in health outcomes for children born with HIV
(Gortmaker et al., 2001; McConnell et al., 2005). Given
the complex physiology of the disease, the difficulty of
its treatment, and its potential to affect multiple family
members, children who live with HIV disease are at risk
of a multitude of medical, neurological, and psychoso-
cial problems (Brouwers, Wolters, & Civitello, 1998;
Brown, Lourie, & Pao, 2000; Donenberg & Pao, 2005).
Children with a chronic illness have significantly
more mental health problems than those who are
healthy. For example, children with sickle cell disease
were perceived by their caregivers as having more
behavioral and emotional problems than their healthy
peers (Trzepacz, Vannatta, Gerhardt, Ramey, & Noll,
2004). Children with epilepsy are at greater risk of men-
tal health disorders (i.e., internalizing and externalizing
disorders) than are children from the general population
(Rodenburg, Stams, Meijer, Aldenkamp, & Dckovic,
2005). Despite the potential psychosocial risks associated
with having a chronic illness, a limited number of
empirical studies have examined the prevalence of men-
tal health problems in children living with HIV and their
primary caregivers.
Neurological and neuropsychological deficits
caused by HIV infection are well documented. Children
with HIV are likely to present with learning problems
and attentional disorders (Brouwers et al., 1998;
Fundaro et al., 1998), behavioral problems (Bose, Moss,
Brouwers, Pizzo, & Lorion, 1994; Havens, Mellins, &
Pilowsky, 1996; Havens, Whitaker, Feldman, &
Ehrhardt, 1994), and cognitive deficits (Armstrong,
Seidel, & Swales, 1993; Donenberg & Pao, 2005). How-
ever, studies examining the relationship between IQ
scores and psychopathology in chronically ill pediatric
populations have obtained mixed results. In children
with congenital heart disease, IQ was found to be nega-
tively correlated with Child Behavior Checklist (CBCL)
(Achenbach, 1991) total problems scores (Utens et al.,
1993). In contrast, no relationship was found between
IQ and CBCL scores in a population of children and

All correspondence concerning this article should be addressed to Michelle J. New, Children’s National Medical Center,
111 Michigan Avenue, NW, Washington, DC 20010-2970. E-mail: mnew@cnmc.org

Journal of Pediatric Psychology 32(2) pp. 123–131, 2007

doi:10.1093/jpepsy/jsj121
Advance Access publication May 11, 2006
Journal of Pediatric Psychology vol. 32 no. 2 © The Author 2006. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org
124 New, Lee, and Elliott
adolescents with spinal muscular atrophy (Laufersweiler-
Plass et al., 2003). To our knowledge, no studies have
examined the relationship between these variables in
children with HIV. Furthermore, research examining
rates of mental health problems, per se, has been limited
(Mellins et al., 2003).
Examination of mental health needs in this popula-
tion is important because emotional and behavioral
problems may affect disease status and illness adjust-
ment (Forehand et al., 2002; Jones, Beach, Forehand, &
Family Health Project Group, 2001). Early identification
of such problems may provide opportunities for preven-
tion and intervention that could improve quality of life
(Jones et al., 2001). Recent data from the Pediatric
Acquired Immunodeficiency Syndrome (AIDS) Clinical
Trials Group (PACTG) found that children with HIV are
at increased risk of psychiatric hospitalizations com-
pared with the general pediatric population (Gaughan
et al., 2004). They reported that it is possible that acute
and chronic effects of HIV infection throughout
neurodevelopment may predispose perinatally infected
children to specific mental disorders. They conclude
that as children with HIV live longer, the incidence of
psychiatric illness may increase, and screening should
be provided within the context of primary care.
Several factors are thought to influence the psycho-
social adjustment of children born with HIV infection,
including (a) the presence of HIV in the central nervous
system during fetal development and throughout child-
hood; (b) co-occurring medical conditions and compli-
cations of HIV disease, including body image issues;
(c) teratogenic effects of drug and alcohol during the
prenatal period; (d) cognitive and neurological deficits;
(e) other psychosocial factors (maternal illness, multiple
separations, transitions, and losses); (f) whether the
child knows his or her HIV status; and (g) environmen-
tal factors (Brown et al., 2000; Donenberg & Pao, 2005;
Gaughan et al., 2004; Havens et al., 1994; Lwin &
Melvin, 2001; Mellins et al., 2003). Environmental fac-
tors affecting families living with HIV include poverty,
violence, racism, overcrowding, and single-parent
households (Armistead & Forehand, 1995). Such fac-
tors would likely increase the risk of psychological diffi-
culties. Clinical rates of depression have been reported
in both men and women with HIV (Bing et al., 2001).
Furthermore, recent studies have begun to examine the
impact of maternal HIV on children’s emotional and
behavioral functioning. For example, children whose
mothers are HIV positive demonstrate more externaliz-
ing and internalizing problems compared to children in
the general population (Armistead & Forehand, 1995;
Forehand et al., 2002; Levine, 1995). Despite these pro-
posed risks, there have not been extensive studies that
adequately characterize the nature of psychological diffi-
culties these children and their caregivers face.
Previous work has suggested that children living
with HIV may be at higher risk of social and psychologi-
cal problems, but available data have been limited and
subject to methodological problems. For example, small
samples and the use of unstandardized measures have
been frequent limitations. Also, although there is a sepa-
rate body of information available about adults living
with HIV, little is known about caregiver mental health
in families living with HIV. More information is needed
to develop appropriate services for children with this
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unique chronic disease and for their families. Only a few
studies have examined the prevalence of mental health
difficulties in children infected with HIV. The primary
objective of this study, then, was to examine psychoso-
cial adjustment in children living with HIV and their
primary caregivers. It was anticipated that children
infected with HIV would present with significantly more
mental health problems (e.g., based on DSM-IV criteria)
than children in the general population (Armistead &
Forehand, 1995; Forehand et al., 1998; Penzak, Reddy,
& Grimsley, 2000). Furthermore, because the impact of
caregiver mental health on child mental health is clearly
established, it was anticipated that the caregivers of
these children would also present with significant men-
tal health problems.
Methods
Participants and Procedures
Following approval by the Institutional Review Board at
Children’s National Medical Center in Washington, DC,
children with a diagnosis of HIV infection who were
receiving treatment at the hospital were recruited into
the study. Inclusion criteria for children were the fol-
lowing: (a) a diagnosis of HIV infection and (b) age
between 6 and 12 years. Fifty-nine families were
approached over a 4-month period to participate. Of the
59 eligible families approached, 54 participated (one
refused and four deferred their decision but were not
able to be contacted in time to enroll them).
The initial phase (Phase 1) of the study involved an
assessment of the child and his/her primary caregiver’s
mental health using questionnaires designed to screen
for mental health problems (completed by the caregiv-
ers). Subsequently, children and caregivers who met the
criteria for “caseness” on the basis of the Phase 1 screen
were eligible for the next phase of the study. Phase 2

involved the completion of standardized psychiatric
interviews [Computerized Diagnostic Interview Schedule
for Children—Version 4 (C-DISC 4) and Structured
Clinical Interview for the DSM-IV (SCID) Screen
Patient Questionnaire (SSPQ)]. The participants were
54 caregivers and their 57 children who were HIV posi-
tive. The study was conducted at a large urban chil-
dren’s hospital, and where possible, interviews were
conducted when families were visiting for other medi-
cal appointments.
Two mothers did not complete Phase 2 of the study,
despite meeting the criteria for Phase 2 by virtue of the
screening instruments used in Phase 1. One mother was
hospitalized, became seriously ill, and subsequently died,
and another mother declined to take part in the second
phase of the study (she did not provide a reason).
Measures
Demographic Questionnaire
A data form was developed for the study to assess basic
background characteristics of the respondents. Demo-
graphic variables included child’s and caregiver’s gender,
age, and ethnicity, caregiver relationship to the child,
and caregiver HIV status. Also available from the child’s
medical charts was the child’s immunologic status
(CD4+ cell count and percent, RNA viral load, and CDC
AIDS category), as well as data on cognitive functioning
and academic achievement based on standardized test-
ing. The child’s disclosure status also was determined
based on caregiver report as to whether their child knew
his/her own HIV diagnosis.
CBCL
The CBCL (Achenbach, 1991; Achenbach & Edelbrock,
1983) is a well-standardized and widely used 113-item
caregiver-report measure of emotional and behavioral
problems in children. The CBCL yields dimensional
scores on three scales (total, externalizing, and internal-
izing problems). The CBCL was selected because it has
been used as a screening tool in several studies examin-
ing mental health symptoms in chronically ill children
(Hudziak, Copeland, Stanger, & Wadsworth, 2004).
A T score above 63 (90th percentile) on either of these
scales is considered to be indicative of clinically signifi-
cant behavior problems. A T score between 60 and 63 is
considered in the borderline clinical range. One-week
test–retest reliability has been reported as 0.89, whereas
the intraclass correlation coefficient was 0.95 (Achenbach,
1991). Furthermore, criterion-related validity is sup-
ported by the CBCL’s ability to discriminate between
referred and nonreferred children with its clinical cut-
points (Achenbach, 1991).
Psychological Adjustment in Pediatric HIV 125
C-DISC 4
Children who met the criteria for clinically significant
problems as measured by the CBCL were requested to
complete the C-DISC 4. The C-DISC 4 is a structured
diagnostic interview designed to assess psychiatric disor-
ders using the DSM-IV criteria (APA, 1994). The C-DISC
4 was designed to be completed by the children them-
selves if aged ≥9 years or by their parent or caregiver if
the children are aged <9 years. The psychometric proper-
ties of the DISC 4 (upon which the C-DISC 4 is based)
are well established, and this interview survey is one of
the most widely used standardized diagnostic instru-
ments for use with children (Shaffer, Fisher, Lucas,
Dulcan, & Schwab-Stone, 2000). Overall, the DISC 4
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showed good-to-moderate diagnostic reliability in a clini-
cal sample for both parent and child versions (Shaffer
et al., 2000), as well as good sensitivity (Fisher et al., 1993).
Brief Symptom Inventory
The Brief Symptom Inventory (BSI) (Derogatis, 1993) is
a 52-item self-report measure adapted from the Symp-
tom Checklist-90-R (SCL-90-R). Items measure current
psychological symptoms on a 5-point scale, ranging
from “not at all” to “extremely.” The measure yields
nine primary symptom dimensions (somatization,
obsessive-compulsive behavior, interpersonal sensitiv-
ity, depression, anxiety, hostility, phobic anxiety, para-
noid ideation, and psychoticism) and three global
indices [Global Severity Index (GSI), Positive Symptom
Distress Index (PSDI), and Positive Symptom Total
(PST)] (Derogatis, 1993). The BSI measures the experi-
ence of symptoms in the past 7 days, including the day
the BSI was completed. The BSI yields raw scores for
individual scales and subscales that are converted to
T scores (standard scores with M = 50; SD = 10) using
age and gender appropriate nonpatient norms. T scores
of 63 or above on two of the six clinical subscales meet
the criteria for a clinical “case” (Derogatis, 1993). Care-
givers who met the criteria for “caseness” based on BSI
scores were asked to complete Phase 2 of the study. The
BSI has high scale-by-scale correlations with the SCL-90-R.
The BSI also has high internal consistency (Cronbach’s
alpha: 0.71–0.85), test–retest reliability, and convergent,
discriminant, and construct validity (Derogatis &
Melisaratos, 1983). Previous studies administering the
BSI to adult patients with HIV indicated higher distress
levels in HIV-positive men (Williams, Rabkin, Remien,
Gorman, & Ehrhardt, 1991).
SSPQ
The SSPQ is an abbreviated computer-administered ver-
sion of the SCID for use with adult populations. The
126 New, Lee, and Elliott
SSPQ program probes DSM-IV Axis I symptoms at a 7th-
grade reading level. Though there are 76 questions, the
branching feature of the program skips questions if a
respondent reports not having certain symptoms (First,
Gibbon, Williams, & Spitzer, 2001). Initial research on
the SCID (upon which the SSPQ is based) supports its
concurrent, discriminant, and predictive validity in a
sample of substance-abuse patients (Basco et al., 1993),
as well as its test–retest reliability (First et al., 2001;
Williams et al., 1992) and interrater reliability (Segal,
Hersen, Van Hasselt, Kabacoff, & Roth, 1993).
Wechlser Intelligence Scale for Children—Third
Edition
The Wechlser Intelligence Scale for Children—Third Edi-
tion (WISC-III) (Wechsler, 1991) is an individual intelli-
gence test that does not require reading or writing. After
2002, the WISC-III was replaced by the WISC-IV. The
WISC-III was used as data were collected prior to the new
test being published. It consists of verbal and nonverbal
subtests. The verbal subtests comprise the Verbal Intelli-
gence Quotient (VIQ), and the nonverbal subtests com-
prise the Performance Intelligence Quotient (PIQ). The
Verbal and Performance Scales together comprise the Full
Scale IQ (FSIQ). Subtest scores and IQ scores are based on
the scores of the 2,200 children originally tested in a very
carefully designed, nationwide sample (Wechsler, 1991).
Average reliability coefficients for the VIQ, PIQ, and FSIQ
are 0.95, 0.91, and 0.96, respectively. Studies comparing
the WISC-III with older versions of the WISC (i.e., WISC-
Revised) and other major intelligence tests address the
construct and criterion-related validity of the WISC-III
(Wechsler, 1991).
Results of the WISC-III were included in this report
because (a) these data were available as part of the chil-
dren’s clinical record and (b) the authors were interested
in evaluating whether there was a relationship between IQ
and adjustment or behavioral problems in this population.
Data Analysis
Given the complexity of the data set and the multiple
questions being investigated, several data analytic strate-
gies were used. Descriptive statistics (means and standard
deviations) were used to characterize the demographic
variables for both caregivers and children and to evaluate
the results of the BSI and CBCL. Correlational analyses
were used to compare the results of BSI and CBCL as ways
of determining the extent to which caregiver distress/
symptom reporting was associated with the identification
of externalizing and internalizing problems in the infected
children. Correlational analyses also were used to com-
pare caregiver demographics and child characteristics to
BSI and CBCL scores and FSIQs to CBCL scores. Because
data did not meet the criteria for parametric tests, age dif-
ferences in diagnosis’ disclosure status were analyzed with
Kruskal–Wallis nonparametric tests. Multivariate analysis
of variance (ANOVA) was used to evaluate the effects of
diagnosis’ disclosure on CBCL scores. Finally, paired sam-
ple t tests were used to compare VIQ to PIQ as measured
by the WISC-III. Only those analyses that reached statisti-
cal significance at p < .05 are reported.
Results
Child Characteristics
Table I describes the demographics on the total sample
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of 57 children. About half of the sample was male
(51%). All 57 of the children interviewed contracted
HIV through vertical (mother–child) transmission. The
mean age of the children was 9.9 years (SD = 1.8; range
6.2–12.7). Seventy-four percent of the children inter-
viewed were from single caregiver families. Twenty-five
children (44%) knew their HIV status, according to car-
egiver report. Older (age 10–12 years) children were
more likely to know their HIV status than younger (age
6–9 years) children (χ2 = 3.87, p = .049).
Immune Status
Of the 57 children interviewed, 51% (n = 29) met the
CDC criteria for an AIDS diagnosis. The mean CD4
percent for these children was 28% (SD = 11%; range
2–58%). The median viral load was 1,538 copies/mL of
plasma (range ≤400–36 million copies).
Academic and Intellectual Functioning
Each child who participated in this study had previously
been evaluated with the WISC-III to determine current
intellectual functioning (see Table II). Most of the chil-
dren (67%) achieved FSIQ scores that placed them in
Table I. Sample Description of Children with HIV (n = 57)
n
Female 28
Mean age (SD; range) 9.9 (1.8; 6.2–12.7)
Ethnicity
African American 53
Caucasian 3
Mixed ethnicity 1
AIDS diagnosis 29
Median CD4+ cell count (SD; range) 731 (523; 3–2,910)
Mean CD4 percentage (SD; range) 28 (11; 2–58)
Median viral load (SD; range) 1,538 (4.7 m; ≤400–36 m)
Child knows HIV+ status 25
 Psychological Adjustment in Pediatric HIV 127

Table II. Sample Description of Cognitive factors in Children with HIV
X (SD; range)
Full Scale IQ x = 85.9 (17.09; 52–122)
Verbal IQ x = 87.55 (16.02; 55–125)
Performance IQ x = 87.24 (17.27; 57–123)
the borderline–average range of intellectual functioning
(M = 86; SD = 17; range = 52–122). Twenty-five percent
of the children had FSIQ <69, placing them in the signif-
icantly delayed or mental retardation range. Five percent
of the children had FSIQ >109, placing them in the high
average or above range. There was no significant differ-
ence between the mean PIQ and the mean VIQ of chil-
Child Mental Health History
Information about the child’s mental health history was
obtained via parent report and medical records (i.e.,
these data are based on previous diagnoses or collateral
reports, not from data obtained during this study). Of
the children surveyed, 14% had a previous or current
diagnosis of Attention Deficit Hyperactivity Disorder
(ADHD), 12% had a diagnosis of a mood disorder, and
5% met the criteria for both. Another 2% met the criteria
for another mental health disorder (e.g., enuresis and
anxiety disorder). Approximately 21% of the children
were currently taking psychotropic medications.
CBCL and C-DISC 4

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dren surveyed. The majority of children who
participated in this study were currently enrolled in a All caregivers completed the CBCL to provide informa-
regular education classroom (68%). While only 32% of tion on children’s social–emotional functioning. Results
these children receive special education services, the fact of the CBCL revealed that approximately 20% of them
that 51% obtained FSIQs in the low average or below endorsed their child as having either internalizing (clini-
average range (89% or below) suggests that they may be cal range: 14%; borderline range: 9%) or externalizing
at risk of learning difficulties. problems (clinical range: 14%; borderline range: 7%).
On the basis of these results, a total of 6 caregivers and
Caregiver Characteristics 10 children completed the C-DISC 4 as part of Phase 2
The majority of the sample of caregivers were female of the study. Of these, 38% (n = 6) met the criteria for a
(91%); 89% were African American (see Table III). DSM-IV diagnosis. Specifically, according to the C-DISC 4,
Thirty-seven percent of the caregivers (n = 20) were three children met the criteria for specific phobia (one
HIV+. The mean age of the caregivers was 46.6 years (SD = child with comorbid ADHD), two children met the crite-
13.2; range 27.3–89.2). Forty percent of the caregivers ria for enuresis (nocturnal only), and one child met the
reported they were single. Twenty percent of the care- criteria for dysthymic disorder. CBCL scores were not
givers were employed part- or full-time. Approximately significantly correlated with child age or gender. Higher
one-third of the caregivers (37%) were the child’s bio- CBCL scores, however, were associated with higher
logical mothers, 29% were the child’s grandparents, 23% symptoms reporting on the BSI.
were adoptive parents, and 2% were foster parents. The Previous studies have suggested that one’s aware-
remaining 9% of the caregivers consisted of relatives of ness of HIV status may contribute to mental health
the child (e.g., aunts and uncles). problems. A recent report from the PACTG indicated
that diagnosis’ awareness was positively correlated with
psychiatric hospitalization (Gaughan et al., 2004).
Table III. Sample Description of Caregivers (n = 54)
Results from the current study appear to partially con-
n
firm these findings. Children who were aware of their
Female 49 HIV status were more likely to present with internaliz-
Mean age (SD; range) 46.6(13.2; 27.3–89.2)
ing problems [F(1, 55) = 8.75, p = .005] as measured by
Ethnicity
the CBCL. The effects of diagnosis disclosure on exter-
African American 48
nalizing problems existed only as a trend [F(1, 55) =
Caucasian 5
Mean education (n; range) 12.1 years (2.3; 4–16.5)
3.41, p = .07]. Because older children (10–12 years) are
Employed (full or part time) 20 more likely to be aware of their diagnosis than are
Single 40 younger children (6–9 years), this analysis also was run
Caregiver HIV+ 20 using age as a covariate. Indeed, further analyses
Relationship to child revealed a significant effect of disclosure status on both
Birth parents 20 internalizing [F(1, 54) = 4.44, p < .05] and externalizing
Foster/Adoptive parents 13 [F(1, 54) = 5.51, p < .05] problems.
Grandparents 13 The authors also included data from the WISC-III to
Other relatives 8 determine whether there was any relationship between a
128 New, Lee, and Elliott
Table IV. Correlations between Brief Symptom Inventory (BSI) Scores
and Child Behavior Checklist (CBCL) Scores
CBCL internalizing CBCL externalizing
BSI Global Severity Index .628* .700*
BSI Positive Distress Index .420* . 406*
BSI Positive Symptom Index .628* .518*
*Correlation is significant at the p < .01 level (two-tailed).
child’s intellectual functioning and reported emotional
and behavioral problems. FSIQ was not significantly
correlated with CBCL scores in this population.
Caregiver Psychiatric History and BSI
Of the 54 adults who completed the BSI, 15 obtained
scores that reached clinical significance. Thirteen care-
givers went on to complete the SSPQ as part of Phase 2
of the study. All of those who completed the SSPQ met
the diagnostic criteria for a mental health disorder.
Scores on the BSI were significantly correlated with
scores on the CBCL (see Table IV), such that caregivers
with higher scores on the BSI likely rate more symptoms
on the CBCL. BSI scores were not related to age, marital
status, employment status, caregiver HIV+ status, or the
relationship of the caregiver to the child (e.g., biological
mother, grandparent, etc).
Discussion
This qualitative study is an early step in systematically
reviewing the mental health problems facing families liv-
ing with HIV. If we consider only those children who
meet the DSM-IV criteria for mental health disorders,
then the results of this study indicate that only a small
proportion of children and caregivers living with HIV
experience mental health problems. In fact, the percent-
age of children in our sample who had identifiable men-
tal health problems was consistent with the rates of
mental health problems among the general population
(USDHHS, 2005). These findings are surprising and
contrary to what was expected and might suggest that
children with HIV and their caregivers are remarkably
resilient in the face of a multitude of challenges to their
own and to their child’s physical and mental health.
What makes these findings even more striking is the
fact that the children who participated in this study
come from traditionally high-risk backgrounds where
social support and access to resources may be limited,
and low economic status and frequent caregiver transi-
tions because of illness and death are common. These
psychosocial stressors undoubtedly add to the burden of
care for these children and their families. Given these
risk factors, one might expect that the rates of mental ill-
ness in these children and their caregivers would be
higher than those we found in this study.
However, several factors are important to consider
when interpreting these results. Twenty percent of chil-
dren with HIV manifested symptoms that reached clini-
cal significance for externalizing or internalizing
disorders as measured by the CBCL. Twenty-one per
cent of the children were on psychotropic medication.
Furthermore, 30% of caregivers endorsed symptoms
that reached clinical significance on the BSI for their
own symptoms of distress. Therefore, although some
signs are present, the behavioral and emotional symp-
toms do not meet the DSM-IV criteria for a mental
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health disorder. These results are relevant in two impor-
tant ways: (a) the rates of mental illness identified in this
population are comparable to rates in the general popu-
lation (USDHHS, 2005) and (b) findings from all mea-
sures suggest that less than half of the families surveyed
reported experiencing significant emotional distress.
An optimistic interpretation of these findings is that
the families are remarkably resilient and have effectively
managed the negative aspects of their child’s HIV diag-
nosis and treatment. However, several factors must be
considered before any conclusions can be drawn. First,
we relied heavily on caregiver report. Some caregivers
may underestimate or overestimate symptoms. A ten-
dency to underreport may explain the discrepancy
between caregiver-reported distress, previous diagnoses
of children based on collateral records, and the preva-
lence of DSM-IV diagnoses in this population. We also
found that there was a significant association between
the caregiver’s rating of their own distress (BSI) and ele-
vated symptoms on their child’s CBCL. It is possible that
adults with depression view the world, and therefore
their child’s behavior, more negatively, and it is also
known that adults who are depressed are more likely to
have children with emotional and behavioral problems
(Downey & Coyne, 1990).
Another issue to be addressed in future studies is
the utility of the C-DISC 4 to children with learning
difficulties. A significant number (25%) of the current
sample of children had a measured IQ in the mental
retardation range (<69). It is likely that this would
impede their ability to self-reflect and understand
questions in the C-DISC 4; however, further studies
are needed to determine to what extent this is true.
The addition of collateral reports from teachers, men-
tors, or peers may add to our knowledge of how chil-
dren are functioning at school and in social
environments.

It is also possible that the measures used lack sensi-
tivity or specificity in identifying adjustment difficulties
or illness-specific factors experienced by children living
with chronic illness (Abidin, 1990; McCubbin et al.,
1983). A few studies have indicated that while the CBCL
has high specificity, it is likely to under-identify medi-
cally ill children with comorbid psychiatric disorders
(low sensitivity) (Canning & Kelleher, 1994; Harris,
Canning, & Kelleher, 1996). Additional studies should
incorporate a wider variety of measures to determine
whether other psychological factors such as caregiver
stress might affect coping in this population. Further-
more, future studies are needed to compare children with
HIV to children with other chronic diseases such as juve-
nile rheumatoid arthritis, sickle cell anemia, diabetes,
and cancer to determine if their needs are specific to HIV
or consistent with a broader pediatric illness spectrum.
Overall, the current study yielded interesting pre-
liminary findings about the prevalence of mental health
problems in a sample of children with HIV and the levels
of emotional distress in their caregivers. These findings,
however, must be considered within the limitations of
the study. First, the current study was conducted on a
select sample in a large metropolitan area and may not
fully represent the population of children with HIV in
the United States. Second, only two measures were used
to index the level of emotional distress experienced by
the caregivers. Furthermore, the children did not com-
plete any measures in the first phase of the study. It is
possible that these measures were not sensitive enough
to detect the mental health needs of these individuals.
Future studies might also consider adding a measure of
parenting stress to determine the level of stress experi-
enced by caregivers caring for children with HIV. Also, it
might be valuable to include a self-report measure for
children to examine the level of distress that they per-
sonally experience (e.g., a self-report measures to deter-
mine whether children who are aware of their diagnosis
similarly endorse more problems with adjustment than
do children who are not aware). A final limitation of the
study was that it was qualitative in nature. It would be
interesting to examine the extent to whether factors
such as immune function, caregiver age, caregiver per-
ceived support, or caregiver health status predict mental
health outcomes in this population and which factors
may be protective in nature.
In summary, while the overall findings might sug-
gest that there are lower than expected rates of emo-
tional distress among this population, the fact that a
proportion of these families do experience significant
distress cannot be ignored. HIV is truly a family illness.
Psychological Adjustment in Pediatric HIV 129
Screening, ongoing support, and family-friendly, cultur-
ally sensitive mental health services should be an inte-
gral part of whole childcare for families living with HIV.
Acknowledgments
This project was supported by a grant to Michelle J. New
from the Research Advisory Council of Children’s
National Medical Center. The authors acknowledge the
contribution of children and families participating in
this study. We thank Maryland Pao, MD, for her guid-
ance and input toward obtaining funding for this pilot
study. We also thank Steven Pankopf, MD, and Lise
Becker Vezina, PhD, for their assistance. Portions of this
Downloaded from http://jpepsy.oxfordjournals.org by on March 15, 2010
article have been presented at the annual meeting for
NIMH Conference on the Role of Families in Preventing
and Adapting to HIV/AIDS, Washington, DC (July 23–25,
2003).
Received June 3, 2005; revision received September 19,
2005 and March 21, 2005; accepted March 31, 2006
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